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I, too endured a childhood as a Stickler kid (although we didn't know until I was 15) I guess we all handle things differntly. It has taken a lot to get over the hurt and pain I felt as a child. Even though I had wonderful parents my days in high school were a living hell. I lost most of my vision within a five month period when I was 13. I remember going back to school after those five months and being petrified. I begged my mother to let me stay home with her.
I had become so attached and dependent on my parents after losing most of my sight that I just wanted to stay home and be protected by them. And unfortunately they thought by not making go out in the world they were doing the best for me. I never had a job until I was 26 years old. If it weren't for my husband who became my boyfriend when I was sophomore I probably would not have made it through high school. My mom just couldn't understand why I didn't want to ride the bus to school when I was a senior. When I graduated I vowed I would never walk through those high school doors again and I haven't.
I went on to college, got married and had four beautiful children. Does the pain of my childhood still affect me? Yes it does. Should it? No, but I don't know if I will ever resolve that part of my life. I feel I was robbed of the normal pleasure of childhood. To this day, I will not wear short hair because I don't want my hearing aids to show. My glasses are no longer the thick coke bottles only due to the fact that I had a lens implant in my only eye. I use to tell my mom when I was little I wanted a head transplant.
I have resented deeply having Stickler's. It took my independence away from me and that is something I will never get over. It has given me great joy to see how life is so much different for my fourteen year old son Andrew who has Stickler's. The advances in technology enabled him to retain all of his sight after three retinal detachments. I told him if I only did one thing in life it was to make sure that he was able to do all the things he wanted to do in life. He rides a bike, skateboards, rollerblades, plays basketball, swims.
To know that he so happy at the age when I was the most unhappy has helped me. And of all things, to know that he will be able to drive, was all I could have hoped for.
As a mother of a Stickler child, it has helped me, but you know what, I still feel alone in being an adult sticky, who has dealt with all these problems for 36 years.